This is the story of my family's journey with a lower leg birth defect. I hope the information I can share will help other parents who find themselves in a similar situation.

Monday, September 12, 2011

My first blog...ever

I am new to the whole blogging thing but I felt that sharing my story might be able to help someone who is in my position in the future.

Our journey so far:

On July 12, 2011 I arrived at Kaiser Zion hospital to receive the first good look at what was growing inside me. This was my 20 week ultrasound and I was honestly thinking the worst thing that could happen was that the tech could tell me I was having a boy (a little dramatic I know but I wanted tu-tu's and barbies so badly!). Not only did I find out I was having a little boy, but this little boy has a unilateral clubfoot on his left side. My husband (Cameron) and I then spent 2 more hours with the tech and a doctor scanning every possible surface of my unborn child. They looked at his palate, kidneys, spine, heart, brain...you name it. We then were whisked away to a genetic councilor , Amy, who was extremely patient and kind. She calmly explained that his clubfoot could be a sign of another genetic condition, more specifically Downs Syndrome or Spinal Bifida. The ultrasound screening and my previous blood test put me at a very very low risk for either of these two but I was offered an amniocentesis. By this time I was gushing tears and my husband was looking a little glossy as well. We are both 25, active, healthy, and have a clean family history. We were in shock that something like this could ever happen to us. Amy kept telling us that clubfoot is something that is genetic and there was nothing either of could have done to prevent it or cause it. Nonetheless, I continued to beat on myself that I had to have done something. I hadn't even so much as taken a tylenol during my pregnancy, I refused the anti-nausea meds from my midwife when I could barely work through the morning sickness, and I had carefully counted every gram of protein I ingested on a daily basis to make sure I was being healthy throughout my pregnancy with my semi-vegan diet (I still eat organic "hippie" eggs and will occasionally have fish). Still, this had to be my fault.

Once Cameron and I got home we both broke down. I fell into pure pity party mode. My family that knew I was anxiously awaiting the news of the baby's gender had been calling once an hour after the scheduled appointment time. I turned my phone off. After a lot of consideration we called Amy and opted for the amnio which was scheduled for the next day. Cameron and I have the upmost respect for those who are special enough to care for a special needs child but we both agreed that we are not that special. (I know that might be extremely heartbreaking or even offensive for someone who is reading this but I feel like I should be honest in case there is someone out there feeling like they are the only ones that feel that way.) The amnio, though extremely painful, went well. After a very long 2 weeks, the results for Downs and Spinal Bifida were both negative and we were left with an ultrasound scheduled for Sept 6 to follow up on my little one's clubfoot.

Between July and Sept I started reading everything I could on clubfoot. I found blogs of moms and amazing children that continued to reassure me that even though there is something wrong with my little one now there won't be something wrong with him forever. The Ponsetti Method results are so encouraging and Dr. Google consistently eased my fears of what the future holds for my son. I honestly felt that I had this clubfoot thing completely under control (BTW Russell's Feet blog was one that really helped me through a rough patch). One of the hardest things to deal with during these few months was my family. There are extremely loving, involved, and well...sometimes very negative. I kept getting facebook messages, emails, calls, and texts about how sorry they are for me and that they are praying that God will heal his foot. Maybe it's the prego hormones but the last thing I need is my support failing to realize the problem at hand and hope that God will just take it all away. Faith is a miraculous thing and there has honestly been some amazing medical anomalies that have occurred. My little man will be fine in boot and bars, save the anomalies for someone whose life is really in danger!

Almost done I swear...

On Sept 6 I went into Kaiser Zion yet again for another ultrasound. No longer was my concern on whether I was having a boy or girl! Looking back, my need for a little girl was so frivolous. I'm almost embarrassed. Cameron met me in the waiting room and we anxiously awaited for the tech and ob to produce "no news" from the ultrasound. Yet again we were wrong. The tech was extremely friendly and bubbly even though my little man would not stop moving for 2 seconds to get a clear picture! Almost 3/4 of the way through the OB showed up and immediately pointed out that his left leg (clubfoot side) was smaller than his right. The tech measured the femurs and they both were the same size but it appears that is tibia and fibia on his left are currently measuring at 3cm and his right is measuring at 4cm. Oh and he has a 6th toe on his left foot as well. Cameron and I pretty much went into a haze at this point and the OB coldly said "I don't think there is anything we can do about a short leg. He will just have a really bad limp his whole life. Or his body could catch up and there is no real concern. Or we can't measure properly because his foot is turned in so badly and there really isn't that big of a difference. Or his left leg could stop growing all together." She quickly pushed us out without any other explanation (I was the last appointment of the day) and scheduled us for an appointment in 4 weeks to compare the growth of his legs. My husband handled the news relatively well...I last a few hours before I broke down.

Since the OB was little to no help I had to reference Dr. Google yet again to get some answers. I found that there is actually a lot that can be done to correct a one short leg (referred in the medical community as LLD or leg length discrepancy). Small differences require no treatment, medium might require an insole, and a large discrepancy might lead to a surgery or 2 in the future. Since I am very early on in this I am anything but an expert but the fact remains SOMETHING CAN BE DONE. I am not going to loose hope that my little man will develop like any normal child. I have yet to tell my family of the doctors new findings mostly because we still don't know what it really will be like. I am not ashamed or embarrassed of my son's condition; I just don't need any extra negativity to stress about. I did disclose this info to my closest (yet furtherest away) friend who is currently pregnant with her second perfectly healthy and normal little girl. She said something to me that turned my whole outlook around on his clubfoot and LLD. She told me "No matter what happens, you will have the raddest little dude around." Whenever I catch myself in pity party mode, I just repeat in my head what she told me and it immediately returns my head securely on my shoulders.

It is so easy to feel sorry myself or to be angry at those around me. It seems like everyone in my world from friends to family to co-workers are having perfectly healthy pregnancies and babies. There are days I feel cheated. There are days that I feel overwhelmed. And then there are days I feel confident and in control. I am now at 28 weeks (almost 29) and I am currently digging myself out of my pity party and trying to constantly remember that I am going to have a rad little dude.

1 comment:

Hello, I found your blog through the yahoo group. I am also expecting a little baby in December with BCF. I went through some of the same emotions as you did in this post, but what what really resonated for me was this- It has never once occurred to me (or my family either, luckily, lol) to pray for a miraculous "cure". For what is ultimately more an inconvenience than anything else- save God's miracles for REAL issues! LOL. But it does take a few weeks to come to grips with all this. I find it amazing that I've now been "aware" of the feet for two months already! It's like CF is already a part of our life, we've already put our support network into place, and it's all going to be OK.

I don't know much about LLD, but while looking at the website of the clinic that will be treating our baby, I came across this video on their pediatric orthopedics unit. If they are doing these surgeries here in Switzerland, I am sure they are also doing them in the US, and your little boy will be in good hands and have a perfectly healthy and normal future ahead of him!!!

About Me

I am a mom to a little boy born on 11/27/2011. Nothing about my pregnancy was easy but I'm afraid that the kind of motherhood life has set up for me will be even harder. I look forward to the challenges but I am dreading any more unexpected surprises.